Understanding the Knowledge and Perceptions About Clubfoot in Karachi, Pakistan: A Qualitative Exploration

Abstract

This paper explores local knowledge and perceptions about clubfoot in the Indus Hospital’s catchment population in Karachi, Pakistan. Data was collected through seven focus group discussions with community members and Lady Health Workers, nine in-depth interviews with parents of children with treated or untreated clubfoot, and one interview with an adult with untreated clubfoot.

We found that participants were unable to distinguish clubfoot from other disabilities. Moreover, participants had a number of beliefs about the causes of clubfoot, which included lunar and solar eclipses, religious explanations, the health status and behaviours of parents, and genetics. While participants were aware of surgery and other allopathic treatments for clubfoot, many also believed in traditional and religious treatments or were unaware that clubfoot is a treatable condition.

This study is the first of its kind in Pakistan and provides important insights that clubfoot programs need comprehensive strategies to raise awareness about clubfoot amongst community members, health providers, and religious leaders in order to be successful.

Introduction

Idiopathic clubfoot, or congential talipes equinovarus, is a congenital orthopedic anomaly of the foot. If left untreated, the condition becomes increasingly fixed and pronounced, and can severely hamper physical mobility. Studies in Uganda¹, Malawi², and Latin America (Chile, Guatemala, and Peru)³ have found that community knowledge and perceptions about clubfoot impact treatment-seeking behaviours. In Uganda⁴ and Malawi², there were a number of misconceptions about the causes of clubfoot and people often did not seek treatment because they were unaware about its availability and did not consider clubfoot to be a correctible condition. In Uganda, where a higher power was considered responsible for clubfoot, people turned to traditional spiritual healers for help instead of allopathic caregivers⁴. Fear of corrective surgery also prevented some from seeking treatment⁴. Similarly, a number of physicians in Guatemala and some in Peru believed that the culture and beliefs of patients were strong barriers to treatment³.

In 2011, the Indus Hospital in Karachi, Pakistan initiated the Pehla Qadam program to treat clubfoot using the Ponseti method. Although there is some literature available on clubfoot treatment options in Pakistan^5-8, there is no literature about local beliefs about clubfoot. Given the links between beliefs and treatment-seeking behaviours, we conducted a preliminary qualitative study to understand perceptions and knowledge about clubfoot in Pakistan. This paper presents the findings of this study.

Methods

The data was collected during September and October 2011 in the Indus Hospital catchment community in Karachi, Pakistan. The Indus Hospital is a free-of-charge 150 bed facility located in a low-income industrial area of Karachi. The hospital’s direct catchment population includes Korangi town, Landhi town, and parts of Bin Qasim town and consists of a multi-ethnic population of approximately 2.5 million people. The population comprises of various migrant settlements adjacent to historical fishing villages along the south-eastern coast of Karachi.

Seven focus group discussions (FGDs) were held, which included three groups of female community members, two groups of male community members, and two groups of Lady Health Workers (LHWs) who are community-based primary health workers in rural areas and urban slums in Pakistan. Each FGD had six to 15 participants, for a total of 65 participants (22 male community members, 22 female community members, and 21 LHWs). Additionally, eight in-depth interviews (IDIs) were conducted with parents of children with clubfoot, one interview with an adult with untreated clubfoot, and one interview with the mother of two children with untreated clubfoot.

FGD participants and the IDI participants with untreated clubfoot were recruited through social workers from Non Governmental Organizations (NGOs) and (Community-Based Organizations (CBOs) working in the Indus Hospital catchment community. We identified parents of children with treated clubfoot using the medical records at the Indus Hospital to identify children with clubfoot who had recently received surgery to correct their condition.

A semi-structured interview guide was developed for data collection which focused on understanding community knowledge, perceptions, and experiences related to clubfoot. Interviews were primarily conducted in Urdu, the national language of Pakistan. A few interviews conducted in Sindhi, a regional language, and were translated into Urdu for analysis. Purposive sampling was used to ensure diversity in gender, age, geographic location, and ethnicity.

Thematic analyses of interviews was conducted using open coding in Weft QDA 1.01. Oral consent was taken from all participants of the study. Ethical clearance for the research was granted by the Interactive Research and Development Institutional Review Board (IRD-IRB).

Results

Familiarity with clubfoot

Most FGD participants were unable to differentiate clubfoot from other disabilities and were unaware about it as a separate condition. When shown photographs of clubfoot, the majority of the FGD participants described it as having twisted feet, being crippled, or being disabled. Some participants described the condition as a birth disability. A few participants confused clubfoot with deformities resulting from polio.

Without knowledge about clubfoot, parents of children with clubfoot often did not immediately realize that their newborn’s feet were affected. Most participants of the in-depth interviews said that they noticed the condition after a few days or after a relative or someone else pointed out the condition.

Causes

Participants ascribed clubfoot to a variety of causes such as lunar or solar eclipses, religious explanations, the health status and behaviours of parents, and genetics.

Lunar and Solar Eclipses

The most common belief held by community members about the cause of clubfoot was related to lunar and solar eclipses. In fact, some people referred to the condition itself as “chand girhan” or lunar eclipse. Most participants believed that any movement by a pregnant woman during an eclipse can lead to clubfoot and other disabilities in the unborn child. As a result, participants said that women are advised to lie flat on their backs for the duration of an eclipse to prevent any harm to their unborn child. Many participants believed that the disability in the child is related to the activity carried out by the mother during the eclipse. For example, a focus group participant said, “A woman I know was cutting vegetables during a lunar eclipse and so her child was born without ears.” While the majority of participants believed that only the pregnant mother’s movements could result in clubfoot, a few participants also believed that movement by the father during the eclipse could have an impact on the physical condition of the child. One participant felt that a lightning storm during pregnancy could also result in this disability.

While the link between clubfoot and disability was a very commonly held belief by participants, not all community members subscribed to this. One focus group participant said, “We used to hear [that a woman shouldn’t move during an eclipse] when we were younger but that thinking has now changed...They say that education is becoming more common and, based on that, the thinking is changing. Previously, women used to say that the lunar eclipse [caused disability] but we don’t think that.”

Some parents of children with clubfoot also believed that the movement of the mother during an eclipse was the cause of their child’s disability. A mother with two children with clubfoot said, “Women[tell me] that you must have bent your legs during the lunar eclipse and, because of that, [your children have clubfoot.]” Some mothers said that they were not aware of the eclipse and therefore did not restrict their movement. One mother said that during her pregnancy there was a lunar eclipse that she did not know about. “I was asleep. It happened at night. I didn’t know about it, otherwise I would have taken precautions.” Another woman said, “[During my pregnancy], there was a lunar eclipse during [the month of] Ramadan. I read the Qur’an during that time...People say that I must have done something, some work, or cut something. I tell them that I didn’t do anything. It was evening time and I never do any work during that time...I just read the Qur’an..[Still,] it must have happened because of the lunar eclipse.”.

Religious Explanations

A number of participants of both the FGDs and indepth interviews attributed the cause of clubfoot to the will of God. It was seen as God-given and natural, which can make the acceptance of the condition easier. An FGD participant said, “[People with children with clubfoot think] that God did this to us. This is also the will of God. This will also have some benefit for us.”

One mother with a child with clubfoot was told by a religious leader that the clubfoot was a sign of the prayers that he had conducted to help her take her pregnancy to term after a number of miscarriages. He said that even if she were to try to treat the condition, it would not be successful as the clubfoot was a mark of his prayers.

Other participants saw clubfoot as a punishment from God. Some felt that it was a punishment for behaviours such as greed, dishonesty, denying people their rights, or using intoxicants. Others thought that it was a retribution from God for making fun of someone with a disability. The interview participant living with untreated clubfoot said, “In our neighbourhood, there is a boy...When his mother was pregnant I used to go there to get milk. My friend told me that this woman used to laugh at my feet....When she gave birth, she had a child just like that...I told my friend that I wasn’t offended by what she said and nor did I wish her ill. [However,] this is a natural thing. It could be that God got angry at her.”

A few participants, including the mother of a child with clubfoot, believed that clubfoot was caused by djinns or spirits.

Health status and behaviours of the parents

Some FGD participants said that not enough nutrition for the mother or a shortage of specific nutrients such as proteins, calcium, iron, and vitamins, in mothers caused clubfoot in the unborn child. A FGD participant said, “If a mother has a shortage in vitamins or calcium or anything, this causes the unborn child’s feet to become bent. Clearly, bones are made of calcium and so I think this must be the cause of clubfoot.” A mother with a child born with clubfoot said, “In our extended family there is a calcium deficiency. As far as I can tell, [my child’s clubfoot] was caused by a shortage in calcium.” Participants linked these nutritional deficiencies with poverty, which prevented mothers getting adequate nutrition.

Some participants also believed that clubfoot could be caused by the consumption of intoxicants such as paan, cigarettes, tobacco, betel nut, or even drugs such as heroine by the mother during pregnancy. A few participants also believed that clubfoot could be caused in a child through drug consumption by either parent. An FGD participant said, “If the father consumes drugs, this too will affect the unborn child and if the mother does then this will have affect the child’s development even more. Drugs get absorbed in the mother’s blood.”

Finally, a few participants linked clubfoot to a variety of causes such as poor hygiene, anaemia, insufficient vaccinations, family planning, getting x-rays during pregnancy, high blood pressure, medication used during pregnancy, not taking care of self during pregnancy, or stress.

Genetics

Genetics were also considered a contributor to clubfoot by a majority of participants, including parents of children with clubfoot. They cited examples of children with clubfoot that have relatives, such as grandparents, uncles, and siblings, who have clubfoot. Furthermore, a few participants thought that clubfoot could also be caused by marriage between cousins or marriage between people of the same blood group.

Treatment

Participants cited a number of allopathic remedies for clubfoot including surgery, special shoes, and plaster casts. Of these, surgery was the most commonly cited. Participants also cited a number of traditional or home remedies for the treatment of clubfoot. The most commonly cited traditional remedies were oil massages or warm bandages. The father of a child with clubfoot took his son to a woman who was famous for her bandaging technique. “My friend said that a lot of people’s broken feet have been healed with her massage and bandage so if you go there, [you child’s foot] will also become alright.” However, he did not feel like it made much of a difference to his son’s foot. Another mother took her child to the doctor when he was a couple days old and was told that she just needed to put oil and massage the foot and that the child would eventually outgrow it.

Another traditional belief that was cited was burying the child in sand, either up to their neck or just completely immersing their legs in the sand. A variation of their belief was that it had to be near the sea or during an eclipse. An LHW said, “My aunt’s [six-year-old] daughter’s feet were okay but she couldn’t walk. We took her to the seaside, dug a hole and put her inside so that only her head was outside. We did this everyday and she became okay. She was able to walk.” Two parents of children with clubfoot said that they were advised to do this with their children but they were too scared.

Some participants also said that treatment could come through visits to religious healers or to the shrines of saints for healing. A mother of a child with clubfoot said that she visited a number of shrines and healers to no avail because relatives told her this was the way to find a cure for her child’s clubfoot.

Finally, some participants believed that there was no cure for clubfoot or they believed that a child would eventually outgrow the condition. Parents of children with clubfoot said that they were often told by friends and relatives that that there was no need to treat it as it would correct itself with age or that it was untreatable. One mother said that a family member told her, “This is a very dangerous disease. This child will stay this way. He will either grow up and move around in a wheelchair or not be able to move around at all.”

Discussion

This study provides unique and important insight into the knowledge and perceptions about clubfoot at the community level in Karachi that have key implications for clubfoot programs in Pakistan. There was a great deal of incorrect information and misconceptions about clubfoot that were common across ethnicities and educational levels of participants.

The study found that participants were unable to distinguish clubfoot from other disabilities, even confusing it with polio. This emphasizes the need for clubfoot programs to create awareness about the unique condition of clubfoot and how it is presented in order to promote early identification and appropriate treatment for this condition.

The study also found that, like in Malawi⁹ and Uganda⁴, there are numerous misconceptions about the causes of clubfoot in Pakistan, many of which placed blame for the condition on the mother. These may lead to the stigmatization of families of children with clubfoot and could have a detrimental impact on mothers of children with clubfoot.

Similarly, there were also a number of misconceptions about treatment that could not only lead to the incorrect treatment of the condition, but can also lead to treatment delays. Thus, it is also important to raise awareness about effective treatment methods and their availability.

Finally, the study also found that these misconceptions were held not only by the general community members, but also by LHWs participating in the study, indicating the need for awareness at both the community and health provider level. Moreover, due to the belief in religious explanations for clubfoot and the practice of approaching religious leaders and healers for treatment, the findings indicate it is imperative to educate religious leaders about this condition and its treatment.